He ain't heavy. He's my brother.
There's a local Down syndrome support group meeting taking place right now. I had been planning to go to this meeting for about a month now. Kelly has no therapies and the one place in town that I was referred to has no openings. I wanted to ask around, see if there are other places, get some resources, the names of good doctors, maybe make some connections, some friends.
Instead, I'm home. My daughters are in bed doing that whimper-whimper-hiccup sound that follows terrible, horrible, hysterical sobbing. I'm pissed off, frustrated, and questioning my parenting skills. What brought this all about, you wonder?
Boots. That's all. Just boots.
Reilly Kate has extreme sensitivity issues. She has trouble controlling her anger which can quickly escalate into rage. She lies and manipulates She needs to be the center of attention at all times, at all costs. And, as of late, she's taken to hysterics. I'm talking about truly brutal hysterics. The kind that send the other kids into fits of sobbing. Hence the reason Iryna is in bed. She fell victim to Reilly Kate's antics. Once again.
Reilly Kate, out of all my children, takes up the most of our parenting energy. I'd say at least 75%. Probably closer to 90% on most days. What little is left is poor quality and split between the other three. It's hard. On all of us.
But she's our daughter and we couldn't love her more if she was flawlessly behaved. She's a wonderful sister to Kelly and Roman's best friend. Iryna loves her so much, she cleaned Reilly Kate's room today. She is as much the light of our family as she is its center.
It has occurred to me, many times, since Kelly's birth that Reilly Kate is special needs. We as a family have been dealing with her special needs since her birth and will continue to do so, I assume, for most of her adult life. At times, like this evening, her behavior can be a burden to the entire family.
Yet, there's no prenatal test for that.
Think about that. A perfectly healthy, normal child with special needs. In fact, most children with special needs are born perfectly healthy and normal. So why is there such a heavy emphasis on testing for Down syndrome followed by intense pressure from the medical community and even society at large to abort? What is it that's so scary about Down syndrome?
It's entirely about the cognitive disadvantage people with DS have. Pure and simple. We have placed so much of our own self worth on intellect and intelligence that we cannot see the value in someone who has significantly less than we. We can't imagine they'll find meaningful work and be satisfied in their careers if we aren't. Or that they'll be happy with their lives or find a mate or know God. How could they, if we can't?
The truth is that people with Down syndrome, overall, are extremely happy with their lives and find meaning in their work and the people they're with. They do find mates and know God. Most attain what we all would like to have: satisfaction.
From my perspective, I have one child that I will have to always try to help stay focused on her goals and find happiness in life. And another child who is pretty happy and self confident. The burden is in the eye of the beholder.
We all are burdens in some way or another. It's part of living together in family units and society as a whole. But many people with Down syndrome are just the opposite in their families, bringing much needed joy and simplicity to an stressed out world.
Now, I'm not all sunshine and kittens about Down syndrome. I think it sucks and if I could change it for Kelly, I would. In a heartbeat. Without thinking twice. It's a chromosomal abnormality that causes so many complications, both physical and cognitive, that I'm not about to start naming them here. And yes, most people with Down syndrome are dependent upon others to assist them with daily living.
But how is that any worse than the kid who is on drugs or schizophrenic or just difficult and unhappy?
It's not.
I like to think that God sent us Kelly to be a remedy for Reilly Kate. To show her how to be happy, to bring her joy, to tap on her heart and make it melt with pure love. I like to think of them as my bookends -- opposite ends, holding our family closely together.
I just hope the Kellster is up for the challenge.
Instead, I'm home. My daughters are in bed doing that whimper-whimper-hiccup sound that follows terrible, horrible, hysterical sobbing. I'm pissed off, frustrated, and questioning my parenting skills. What brought this all about, you wonder?
Boots. That's all. Just boots.
Reilly Kate has extreme sensitivity issues. She has trouble controlling her anger which can quickly escalate into rage. She lies and manipulates She needs to be the center of attention at all times, at all costs. And, as of late, she's taken to hysterics. I'm talking about truly brutal hysterics. The kind that send the other kids into fits of sobbing. Hence the reason Iryna is in bed. She fell victim to Reilly Kate's antics. Once again.
Reilly Kate, out of all my children, takes up the most of our parenting energy. I'd say at least 75%. Probably closer to 90% on most days. What little is left is poor quality and split between the other three. It's hard. On all of us.
But she's our daughter and we couldn't love her more if she was flawlessly behaved. She's a wonderful sister to Kelly and Roman's best friend. Iryna loves her so much, she cleaned Reilly Kate's room today. She is as much the light of our family as she is its center.
It has occurred to me, many times, since Kelly's birth that Reilly Kate is special needs. We as a family have been dealing with her special needs since her birth and will continue to do so, I assume, for most of her adult life. At times, like this evening, her behavior can be a burden to the entire family.
Yet, there's no prenatal test for that.
Think about that. A perfectly healthy, normal child with special needs. In fact, most children with special needs are born perfectly healthy and normal. So why is there such a heavy emphasis on testing for Down syndrome followed by intense pressure from the medical community and even society at large to abort? What is it that's so scary about Down syndrome?
It's entirely about the cognitive disadvantage people with DS have. Pure and simple. We have placed so much of our own self worth on intellect and intelligence that we cannot see the value in someone who has significantly less than we. We can't imagine they'll find meaningful work and be satisfied in their careers if we aren't. Or that they'll be happy with their lives or find a mate or know God. How could they, if we can't?
The truth is that people with Down syndrome, overall, are extremely happy with their lives and find meaning in their work and the people they're with. They do find mates and know God. Most attain what we all would like to have: satisfaction.
From my perspective, I have one child that I will have to always try to help stay focused on her goals and find happiness in life. And another child who is pretty happy and self confident. The burden is in the eye of the beholder.
We all are burdens in some way or another. It's part of living together in family units and society as a whole. But many people with Down syndrome are just the opposite in their families, bringing much needed joy and simplicity to an stressed out world.
Now, I'm not all sunshine and kittens about Down syndrome. I think it sucks and if I could change it for Kelly, I would. In a heartbeat. Without thinking twice. It's a chromosomal abnormality that causes so many complications, both physical and cognitive, that I'm not about to start naming them here. And yes, most people with Down syndrome are dependent upon others to assist them with daily living.
But how is that any worse than the kid who is on drugs or schizophrenic or just difficult and unhappy?
It's not.
I like to think that God sent us Kelly to be a remedy for Reilly Kate. To show her how to be happy, to bring her joy, to tap on her heart and make it melt with pure love. I like to think of them as my bookends -- opposite ends, holding our family closely together.
I just hope the Kellster is up for the challenge.
posted by The Histrionics of a Fat Housewife at 11:36 PM
2 Comments:
That was lovely Heather. I wish I could provide you some insight into RK. I have no experience with kids like her, at her age any way. It sounds very stressful.
Beautiful!
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